ORGANIZATION SPOTLIGHT BY LINDA ZANI THOMAS From our families to yours, we are honored to present a description of the elements that make the Community Options, Inc. Red Ribbon Academy medical special needs day program work so well. Although told from the perspective of families of medically fragile adults with developmental disabilities, the basic premise of creation of a day program using self directed
service options can be adopted for all types of developmental disabilities. Our adult children can live at home or in a community residence and have a good quality of life – but only with true understanding of the population, the proper level of supports and commitment of adequate state, federal and/or private funding.
A NEW JERSEY AND US PERSPECTIVE
New Jersey has made great inroads in home-based living for the medically fragile population the past four years. “Families provide fundamental information that is necessary for the development of vital services,” said Dr. Dawn Apgar. New Jersey Department of Human Services’ Deputy Commissioner. “They also bring creative perspectives that can be the catalyst for innovative service development. The idea for Red Ribbon Academy came from families. This is a perfect example of our efforts here in New Jersey, to move toward self-direction, where individuals and their families direct their service options. Our state, as well as states across this nation, are focusing on providing service options that enable more adults with complex needs to reside in the community with their families, or in various types of community living programs,” added
Dr. Apgar. Our relationship with the Division of Developmental Disabilities (DDD) developed over a period of several years and is at heart based on the fundamentals of good business practice. It is important to note that we were able to accomplish our goals with no money, no lawyer and no connections.
MAKING IT HAPPEN
Red Ribbon Academy is based on an original concept by the five of us (the author and fellow founders Dr. Marsha Wilks, Vicki Allen, Lisa Crilly and Linda Salerno) and was made a reality by our collaboration with multi-state provider Community Options, Inc. (COMOP.org) under the guidance of Svetlana Repic-Qira, Vice President Regional Director. We toured all existing day programs in Bergen and Passaic counties and chose Community Options after visiting their Journeys program. After we saw the caring staff, comfortable surroundings and engaged clients we asked Svetlana if she would work with us to create a program for our population. The State of New Jersey provided the majority of funding, with the package including start-up monies for
adapted vans, Hoyer and other lifts and changing tables, basic furniture and staffing and annual operational costs. Some states (including New Jersey) are moving toward a Medicaid feefor-service (FFS) model, with both State and Federal funding in the mix. This model allows for more family involvement and creativity, but it also may limit the amount of start-up funding available. Red Ribbon Academy was created prior to FFS with a traditional contract.
Executive Director Ayesha Patrick works with the regional office of DDD to obtain funding for 1:1 staff for those who need it. Over 75 percent of the current Red Ribbon Academy attendees use wheelchairs and the others have motor skills challenges requiring adapted movement to gain skills, build team spirit and friendships. Some have g-tubes and most have special feeding needs, and families have a great interest in nutrition. Community Options made these two essential building blocks of good health regular weekly activities at Red Ribbon Academy, funded through the state contract. Professional chef Joel Scheinzeit creates healthy food items during
his biweekly sessions in the kitchen, teaching about nutrition and helping each student learn help in its preparation. Adapted physical education instructor Susan Orkand from New Jersey All People Equal (NJAPE.org) leads the students and staff in a weekly hour-long class designed to bring out joy, strengths and purposeful movement.
PRIVATELY FUNDED PROGRAM ELEMENTS MAKE ALL THE DIFFERENCE
Many crucial elements of this day program were not funded by the State, including adapted
communication devices, therapy equipment, the Sensory Room, physical, occupational and speech therapy consultation and special sports events. These are key to getting the students to the next level in their lives. The Parents Group has raised funds from events such as our Wine Tasting Dinner, Family Bowling Days, and boutique sales, with 100 percent going directly to improve the health and lives of the students at Red Ribbon Academy. “Red Ribbon Academy creates a bridge for successful community living for individuals with intense medical needs, by offering a nurturing and stimulating program to attend during the day. It is a remarkable example of public-private partnership, as the community was engaged in raising money for critical program elements, which could not be paid for by the state,” added Dr. Apgar.
We started fundraising two years prior to opening day to create a Sensory Room for this particular group of individuals, what we considered an essential element of Red Ribbon Academy.
The Sensory Room: As we looked at all of the vendors’ catalogs and toured existing
multisensory environments (MSE) in our area, we realized that it was quite possible that we could choose the wrong items and that we needed some kind of guidance. Through one of the most fortuitous things that happened to us on this journey, we started a relationship with national treasure Linda Messbauer, an occupational therapist from Queens, NY who designed and opened the first sensory room in theUS in 1992. The space for the Sensory Room was down to the studs when Linda first saw it. We turned over the reins to her and she created the perfect Sensory Room so all of the students can make new brain/body connections and improve cognitively,
neurologically and emotionally. It has become the heart of the program and has helped the students achieve their individual goals, at times with spectacular results. To see for yourself, please go to YouTube and take a look at our videos under “Red Ribbon Academy”, especially the 11 minute one. There you will see a beautiful young lady, Marissa Allen, in our Sensory Room.
Therapy Consultation: Getting therapists involved was also a key element. Founding Mother and volunteer therapy coordinator Lisa Crilly works directly with Program Director Leslie Flores to provide weekly OT, PT and Speech therapy consultants who observe each student and work with the staff on maximizing their skills.
Community Sports Events: Another innovation at Red Ribbon Academy is the use of inclusive team sports to create rich relationships with the community. The Super Bowl game created by inclusive sports expert and NJAPE founder Matt Schinelli (https://www.youtube.com/watch?v=uGoumeS2qSI ) really got to the heart of sports, and for many it was the first time they had EVER been on a team. That football game made the students feel good about themselves, brought their strengths to the surface and helped them gain the wisdom that only teamwork brings.
A DREAM COME TRUE
So, what happened? “I am so proud of the nurturing environment that our caring staff have provided,” said Svetlana.” Its benefits are evident the minute you walk the doors of the Red Ribbon Academy and see the smiles on the faces of everyone there.” Founding mother Linda Salerno sums it up this way: “We dreamed of a day program that would be safe, stimulating and
nurturing. This program would be built on enjoyment, friendship and respect for all individuals. Our children’s medical needs would be understood and addressed yet those needs would never
limit their participation in any activity. With a great deal of hard work and perseverance, Red Ribbon Academy is truly that dream come true!”
“In my 37 years of working with adults with developmental disabilities, this program has the best one to one staff to participant interaction I have ever experienced. Staff are always talking to
participants not among themselves. It is both a credit to the parents and the diligence of Community Options that makes this such a wonderful program.” – Linda Messbauer•
ABOUT THE AUTHOR:
Linda Zani Thomas, mother of Marisa Thomas, is a community organizer and one of the Founding Mothers of Community Options, Inc. Red Ribbon Academy, firstname.lastname@example.org. 201-314-8045. Linda, along with fellow founders Dr. Marsha Wilks, Vicki Allen, Lisa Crilly and Linda Salerno created the Red Ribbon Academy concept, and collaborated with Community Options, Inc. and the State of New Jersey to open this model medical special needs day program on March 25, 2013